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Mum is more aware than I thought - heartbreaking

blueorchid

Registered User
Feb 18, 2016
50
Mum has been in a care home for 11 weeks now following my Dad's death. In that time I've seen her 3 times. The last time, although only for 15 mins, we were able to have a good conversation as we were in her room without distractions.

I had thought that Mum wasn't aware that Dad had died and that was a small blessing as she had been spared the grief, especially considering that she was in the home on her home without visitors for the first 6 weeks. The home had told me she wasn't aware and didn't know she was in a care home.

The conversation I had with Mum was quite lucid. I talked to her normally and she responded normally (rather than a cheery 'everything is fine' voice which I'm starting to realise infantizes her). I feel like she has been gaslighted the entire time she has been in the home and people haven't explained to her that Dad has died, including me.

Dad was mentioned in our conversation last week and I asked her if she knew what had happened to Dad. She said yes and that he had died. I asked her if she remembered anything about the night he died (she was on her own with him) and she said she remembered him going down, falling and hitting the floor. She said there was so much she missed about her life and most of all she missed Dad, and that was the worst of it. She said that her life was over.

I am completely broken by this. The knowledge that she has been aware and no one has been straight with her is upsetting me so much. And the fact that she continues to deal with her dementia and her grief on her own in the home. It's heartbreaking. It was the first time I'd been into her room as well and it was awful. Like a prison. Her life is indeed over.

I'm in the process of trying to get her moved closer to where I live (1.5hrs away) but everything is so very slow and no date in sight of when that will happen. I hope I will be able to visit daily and take her out but I'm starting to realise that this may not happen. I worry that I'll get her close to me and that due to Covid she'll continue to be on her own and visits will continue to be 15 mins per week for a very long time to come. This is no life for anyone.
 

imthedaughter

Registered User
Apr 3, 2019
478
This is indeed heartbreaking. It sounds like your mum may have fluctuating capacity, like my dad does. Sometimes when I speak with him he's relatively normal, and then other times he's got half a dozen conflations going on and sounds like he's completely mad. He's not, of course, he has two types of dementia. I think you saw mum in a lucid moment, but some of the time she may not be aware of what happened to dad. It's so cruel. It's hard to know when you can speak freely with them or when you need to go with the conflation.

On the practical side, is there anything you can do to have her room made less like a prison? Some personal touches or ornaments?
 

canary

Registered User
Feb 25, 2014
13,418
South coast
That is very sad @blueorchid , but lucidity does tend to come and go, like a light bulb that is going and flashing on and off. Even in late stages mum had moments of lucidity. Please dont think that because she had a lucid moment with you that she is like that all the time, because she probably isnt.

I remember talking to mum on the phone a couple of months before she moved into her care home and the conversation went a bit like this

Mum - Whats happened to [her husband]? I havent seen him recently?
Me (tentatively) he died you know
Mum Oh, I thought he had. Was it a long time ago?
Me Yes, mum, about 30 years
Mum Oh thats OK then.

A brief conversation then:
Me Id better go now mum, I have to get the dinner on
Mum Ive no idea what Im going to do for dinner (pause)
Never mind [husband] will be home soon and I expect he will know.

If you read Annielous thread (especially the last few pages) you will see her recording most accurately the way they can switch from lucidity to not knowing in an instant.